Shay is absoultely in awe of the snow today, just a shame he can't stay out long in it. This weather is fantastic for him as all those germs are being wiped out.
Today the community nurse was coming to the house to do Shay's bloods but because of the weather this has now been cancelled; she will now do these Wednesday.
Shay is looking slightly paler since the last transfusion but we don't think his levels have dropped below the 7 so hopefully no transfusions.
The last week Shay's appetite has started to dwindle again especially at dinner time, he gets really tired and his eyes look more sunken and red rimmed. Our little boy is still full of energy and still has us running around after him. An afternoon nap would do him the world of good but he completely refuses to sleep.
About Me
- Shay
- London, United Kingdom
- Welcome to Shay's story and thank you for taking the time to find out how Shay is doing. It is a place to share our hopes, sadness and the happy times that our little man has. Shay in April 2008 was diagnosed with Pearson's Syndrome a Mitochondrial disease with no cure. Pearson syndrome is very rare, less than a hundred cases have been reported worldwide. It characteristically present in early infancy with pallor, failure to thrive, pancytopenia and diarrhoea. Additional manifestations often include progressive external ophthalmoplegia, proximal myopathy with weakness, and neurologic disturbances. Multiple organ involvement is quite variable. Most infants die before age 3, often due to unremitting metabolic acidosis, infection, or liver failure. Those few individuals who can be medically supported through infancy may experience a full recovery of marrow and pancreatic function. These children eventually undergo a transformation from Pearson's syndrome to Kearns-Sayre syndrome with the development of ptosis, incoordination, mental retardation and episodic coma. Life as we use to know it I cannot remember. We have to live in hope that a miracle will happen for our son.
Bless him wish i was well enough to have come round to see Shay in the snow today. As soon as i am well i will be round to see little man. In the meantime give him big hugs and kisses from JuJu. xxxxx
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